Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

It is becoming more common to see families posting photos at the end of their child's life and yet each time I see such pictures I am thankful for the parents amazing sharing. My Baby Is An Angel is a blog by a mom of six children honoring one child still born and later named Noah-Alexander (along with her guilt about the silence accompanying this birth) and Bennett-Chadlen "Nimkee" born with Trisomy 13 who died at one week. The website includes links to resources and other family sites and Melissa later wrote a letter wishing parents and staff were more aware that Trisomy 13 is not always a condition 'incompatible with life'. Family photos on Picasa include a poignant transition from mom's pregnancy to grief and death in the NICU and a beautiful set of photos by a photographer with Now I Lay Me Down To Sleep of Nimkee's death in SickKids NICU. Bennet died surrounded by his family's love and tears and father Chandlen playing a song composed for his son. You can hear the song accompanied by the pictures below. Thanks to Melissa and Chandlen for sharing these moving and unforgettable images of Bennet's life.

~Breaking the silence of the taboo subject of Infant Loss~

~The background music was written and recorded by Bennett-Chadlen's father, Chadlen. He wrote the guitar portion while he was in the NICU, and this is what our sweet boy heard as he drifted away in our arms.....this montage captures our final moments together. Viewer discretion is advised. I realize that many of you may not understand why a family might want these photos, but they're all we have to hold onto.

~I share this with you.....it's your choice whether you view it or not. Upon viewing, you will understand what we went through....please show compassion to any grieving mothers that you know. Even if you don't have words, a tender touch is enough.

~I'm here to break the silence....so many like me don't have to feel so alone.

On Friday, Pamela and I picked up toys at several spots downtown for a toydrive with several SickKids families.

Child Life worker Kim 0'Leary had sent a list covering toddlers to teens and from rattles and aquariums to Nintendo DVs. The Sasha Bella Fund donated $2,500.00 to Rehab for toys and tools and The Wire filled a trolley to cover the ICU lists and art supplies, cars, mini ponies, clay, games and books.

At 2p.m Friday the families met and filled a chunk of the Atrium by the front desk. I took this picture with my phone of the Celsie and Veloso and Schultz families.

“It’s really user-friendly. It’s a bit more than Facebook. You can connect with other patients and friends as well, so you can keep up with them. You’re able to feel as normal as you can.”

Upopolis tags itself as "a healthy space for kids to connect" and the factsheet describes it as software as a service from the private foundation Kids' Health Links Foundation hosted by Telus on a private network at several Canadian hospitals since 2007 - it is specifically for kids to communicate with family, friends, teachers and classmates and access medical information and hospital events and resources. There is no public registration so I expect referrals are initiated with hospital and care centre staff. Techvibes writes about Christina Papaevangelou and her father Basile working to find "ways to help kids in care stay connected" and developing a partnership wtih McMaster Children’s Hospital and TELUS. Kudos to all who made it happen!

Two years ago when I spoke to SickKids technical services about family-staff web communication it was confirmed the hospital was seeking a social media platform. I am pleased they chose a patient inspired software made in Canada and along with Care Pages, SickKids now supports patient to patient and family to public communication. The tools cry out for hospital wide wireless, a service rolling out in other Canadian paediatric hospitals. Expect computers in family resources areas and on the floors to be saturated. Free wireless supports hospital family diversity since families with means have a Rogers or Bell wireless stick.

We are writing to ask for your help in circulating a survey link for parents and caregivers about parental/caregiver presence at anesthesia induction and post-anesthesia recovery.

The survey is part of the Child and Family in the Healthcare System project of the Canadian Child and Youth Health Coalition (CCYHC). Some of you know about the project; some of you know about the Coalition, and some of you know about both, but please allow us to provide the essential background for those who don't. (Much of this information is also included in the attached PDF to be forwarded to parents and caregivers as well as on the last page of the online survey).

Background

The Canadian Child and Youth Health Coalition (CCYHC) is a collaboration of ten major national organizational and program members working together with a common vision to advance the cause of child and youth health care in Canada. We represent The Canadian Family Advisory Network (CFAN) on the Coalition's Steering Committee. You can find out more about the Coalition and its members at www.ccyhc.org<http://www.ccyhc.org/>

CCYHC has established the Child and Family in the Healthcare System Working Group to explore the ways in which children, youth, and their families are supported and included within the healthcare system, a task that entails, among other things, identifying differences in practice at various hospitals.

The Survey

The Working Group's first project is the investigation of hospital practices related to parental presence at anesthesia induction and post-anesthesia recovery. Different hospitals have different practices as to if, when, and how parents/caregivers can accompany children into the operating room until the children are asleep and in the recovery room when the children are waking up from anesthesia.

Please note that though the issue is generally called "parental presence ..." we are keen to hear from other caregivers (grandparents, foster parents, aunts, etc.) who may have been present-or who perhaps wish they could have been present-with a child or youth during induction or recovery.

We would appreciate your help in distributing the link to the survey to all parents or caregivers on your advisory council or, for those of you who work with families in a different capacity, to those parents and caregivers you think would, because of their experience with a child or youth who has had one or more surgeries, be interested in contributing. The survey is submitted automatically electronically online, so there's no need to collect surveys - it is all paperless.

Please cut and paste the text (including the survey website link) at the bottom of this page and forward to your contacts. (We have already sent another survey to all of the academic health centers that have paediatric surgical programs and to a number of community hospitals across Canada, and we will soon send another survey to members of youth and children's councils.) The survey takes about 20 minutes to complete.

We hope most of the parents and caregivers can complete the survey by December 15, 2009.

Survey Results

The names of all responders and the name of the hospital where their children's surgery or surgeries were performed will be kept confidential. Any reports, publications, or presentations resulting from the surgery results will contain only summary data that will not identify the parents/caregivers or the hospital. We will be happy to share the results with all those who contributed and with all the Coalition members. Working with the survey results, the Working Group, in consultation with CCYHC, will determine best practices and develop recommendations that will be shared with all the hospitals.

On behalf of our Working Group, thank you for your interest and participation. If you have any questions, please contact us by calling Melissa Clulow (CCYHC National Coordinator) at 514-656-1268 or by emailing mclulowATcheo.on.ca

We are writing to ask for your help in completing a survey for parents and caregivers about parental/caregiver presence at anesthesia induction and post-anesthesia recovery. The survey is part of the Child and Family in the Healthcare System project of the Canadian Child and Youth Health Coalition (CCYHC).

Please click on the link below to complete the online survey which asks about your experiences going with your child into surgery and the recovery room.

The Sasha Bella Forever blog began in 2006 as a tribute to our first daughter and her caregivers as we brought her home from the hospital to die. Expecting just a few days together, we had five incredible weeks. These posts celebrate the life of children with complex care needs and their families and staff partners in care. The posts also share the work of The Sasha Bella Fund For Family Centered Care at SickKids Foundation across the spectrum of care, education and research. From Sasha's experience, the fund and blog focuses on partnership, inter-professional and inter-disciplinary teamwork, palliative and end of life care, patient safety, care for the care-givers, patient and family advisory, peer support and the special challenge of the ICU. Please share, or Like or comment if you are moved by a particular post or think of The Sasha Bella Fund during your charitable giving.Regards,Jonathan Blumberg (Sasha's dad)

The Fund supports family-centered interprofessional care, family advisory, patient safety and palliative care with low cost initiatives like awards, small grants to programs and research, website initiatives, murals, sharing our story and volunteering at the hospital. See a list of fund projects and please consider donating securely online at Sasha's SickKids Foundation page (a tax receipt is emailed immediately) or by calling Laurel at SickKids Foundation.

All donations to a directed family fund like the Sasha Bella Fund For Family-Centred Caregoes to projects at SickKids Hospital with no Foundation overhead.

What is family-centered care? Frank Gavin offered a great definition in the 2005 Family Advisory Council report:

"Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Thanks to all the almost 1000 families who have helped SickKids through The Sasha Bella Fund since 2006 and who in October 2009 helped raise $20,000 for Sickkids Hospital and Bloorview Kids Rehab. Special thanks to the performers who donated their special skills, Sho Mo + The Monkey Bunch, Charlie and Little Fingers, Deb Maes, Bloorview therapeutic clowns and Master Choung Taekwondo club, and The Stockyards, Ravisoups and Mildred Pierce for an incredible lunch. Checkout pictures of the 2009 Fun Day by Peter Fenyevesi and Bryan McBurney.

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids ... encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look." Janis Purdy and Diane Flacks

Sasha was born with Alagille Syndrome and pulmonary atresia, serious liver and cardiac defects leaving her ineligible for transplants. Cardiac surgery was risky but without more oxygen to her lungs Sasha would die. Our core SickKids team was the 4D nurses, cardiologist Dr Jennifer Russell, surgeon Dr Glen Van Arsdell, catheterization specialists Dr Lee Benson and Dr Jin-Lee and gastrointerologist Dr Simon Ling. The plan included catheterizations to widen tiny arteries, surgery to install a central shunt at 3 months, more caths and more surgery to partly rebuild her collateral arteries into a pulmonary artery. A blue baby came home after birth and grew into a golden haired 18 month cherub with only short hospital stays. She appeared to thrive; yet as we rebuilt Sasha's heart, her liver weakened. A second surgery resulted in hemorrhage, fever, liver failure, portal hypertension, GI bleeds, and a jejunal fistula to her belly. We accepted Sasha was dying when she required daily blood transfusions. She came home supported by the Temmy Latner Centre, TCCAC nurses and SickKids - we expected 3 days with our peach but she stopped bleeding and lived five precious weeks.